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Thread: Sinus wg

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    how did you like the nebulizer?! i think i really wanna try that next?

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    Helped my LUNGS in the nebulizer, but what I said is that we used the little steroid vials used for nebulizer inside the Neil-med bottles to get steroids into the nose and sinus topically.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    I continue to use the NeilMed bottles, with the provided saline packets, distilled or purified water, and sometimes Bactroban dissolved in the water. It doesn't really completely dissolve, but it gets where it needs to go. I also have a prescription for Budesonide, but have not used it in a while. It comes in little 2ml plastic vials, and gets added to the rinse solution. This drug is a corticosteroid developed for treatment of asthma, I believe, but is effective for treating nasal inflammation.

    Again Lauren, it's not clear from what you said that a doctor has diagnosed an infection. You might consider seeing a doctor sooner rather than later if you have signs of infection, or even if you don't, so you can discuss measures (like rinsing) to make you more comfortable.

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    Lauren, from my point of view, we do the rinses to prevent too much build up of mucus in the sinuses, nasal passages, and nasal cavity, because the excess mucus we get with WG, which tends to be crusty and hard to remove, will block up any openings so things can't flow out freely, which will promote buildup of any bacteria, whether harmful or not, and will promote infections along with the tissue damage that occurs from damaged blood vessels and lack of oxygen with this disease. I was doing the rinses for 2.5 years before dx, when I was simply thought to be prone to allergies and sinus infections. Once I was found to have Wegs, things fell into place and I got treated, but by that time, my septum had collapsed and I had saddle nose. If you want to avoid that, you'd do well to rinse diligently, and maybe you could do it at night instead of during the day. Also, have your ENT periodically remove the built up gunk in your sinuses. They use a vacuum system to help, and they are good at it. You'll be surprised at what comes out of there by either method. Getting the gunk out will leave a lot less place for any excess bacteria to grow, and that along with your Wegs meds will be reducing the inflammation that can cause permanent damage. You may get to the point where you enjoy seeing that stuff come out, and it will become less as you recover. Good luck.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by drz View Post
    Bactroban sinus rinses can be used for severe nasal or sinus infections. I have had it prescribed once but it was very costly to make up the rinse for me so be sure your insurance will cover it first. It is made from Mupirocin and had to be kept frozen till use. Some times doctors will suggest other additives that also have some germ fighting ability. I have used peroxide and baby shampoo as additives to my sinus sinus rinse for serious persistent infections. Others have used a mild tincture of iodine. The shampoo seems to also help loosen tough crusts. Your ENT may suggest other additives but any such additive should be checked out with your ENT to be sure it is right thing for you. Some times they have to culture it to find out what will be most effective to treat an infection.

    Sinus rinse is a must…daily…weekly… also Bactroban is a must also…My ENT had me use Mupirocin, google it …

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    I guess my main confusion in all this is way the bacteria in my nose grows so quickly. i get debridements (a doctor cleans out my sinuses) pretty frequently i get them done even 2 weeks! but I've noticed that after i get a debridement done my nose will fill up (in my cheek) within hours! like its almost an everyday thing that i have to clean out my nose (with tweezers)! I've been on multiple antibiotics and it helps but doesn't help enough. and although everyone is saying rinse its not really helping in my case. for example say i get a debridement my nose is completely clear and i start rinsing to keep it clean. as soon as i stop rinsing or go to sleep and wake up the next morning my sinuses are filled again. its very frustrating. I've never tried shampoo or anything so i will bring that up the next time i go to the doctors maybe that will help break it up. but the other thing is that i need to be functioning during the day and when i do a rinse it drains me and i don't feel good the rest of the day i don't understand it or why that is. but i recently just looked up a nebulizer which might be better? since I'm sniffing it in rather than having solution pour through my sinuses? i have no clue ugh. but thank you guys for responding! I'm going to bring up all this with the doctors when i go. i need to switch doctors but I'm military and tricare has not been making it easy for me. so i was trying to wait til i move in september.

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    I think as Mike said or implied, that nebulizers are designed for the lungs and breathing through the mouth. I don't know if there's anything comparable for nose breathing. But you could try inhaling warm steam from a bowl of water, towel over head, to loosen things up and get them flowing. I don't know if it would help to add meds to the steamy water, but water by itself is harsh, so you can add soothing and therapeutic herbs such as peppermint or eucalyptus, or even salt, to make the steam more mild. I used this method a lot early in my Wegs, both for my lungs and sinuses. And I would wait until after this to do my sinus rinse.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    You could also ask about using a steroid nasal spray such as Flonase or Nasocort, if you aren't already, to reduce inflammation in the nose and sinuses. These are now available OTC.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    I've seen a sinus nebulizer that has an attachment just for your sinus. and that you add steroids to the nebulizer to inhale. its an alternative kind of method than a rinse. i have used flonase before! and i defiently want to get a diffuser for those essential oils!

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    I too had recurring crusting, even after the doctor cleaned them out. In less than a day, I would crust right back up. It was explained to me that removing the crusts was like picking a scab off of an infected wound. Once removed, the scab is gone, but the wound is still infected, and will scab over again. Treating the infection after the scab is removed, is really the best way to treat it.

    If your ENT is not culturing the bacteria (probably a strain of staph) and prescribing the right antibiotic for it, you will never be able to get on top of the infection. I do believe you need to have the right oral antibiotic as well as a liquid one that you can rinse into your nose and sinuses to get ahead of these infections.

    In my case, just rinsing with a single squeeze bottle (even 2-3 times a day) was not nearly enough to keep my nose clear. I too was in the ENT office weekly to have crusting removed.

    Like I said, I was running 3L (a gallon) of saline through my nose two times a day, sometimes THREE times a day. That was the only way for me to stay clear. My ENT says this is probably the single best thing that could have been done to help get my nose and sinuses back under control.

    Now that we have the staph infection under control, I am down to rinsing about every 2-3 days. I still do the 3 Liters though.

    Does that help?
    Last edited by MikeG-2012; 03-10-2017 at 12:46 AM.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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